When I got to chemo today, I was still a little bloated and mentioned my bloating this weekend. The doctor said it seemed like normal GI side effects, but she heard a slightly higher pitch in my belly, so she sent me for an X-ray before treatment just to make sure the infection I had previously had ...

I had mouth sores for my first and second round but then they never came back again. I've realized each round came with different side effects and I just have to be proactive about managing whatever comes. I also had a chemo break after about five cycles. It wasn't planned, they had to do it because...

I know in many cases the pump is used to get a non-resectable patient to resectable. Is that what she would be doing in this case? In retrospect I think we probably would have taken this path had we started with MSK sooner, since none of the first oncologists with whom I met seemed to have much hope...

Just had an interesting interaction with my RN here at Northwestern. She was apparently the one who originally fielded my pump question on MyChart when I asked for an MSK / pump referral. Turns out she spent a year there working on Kemeny's team. What she shared: 1) Kemeny is a genius 2) She's a wor...

One of the oncologists with whom I first met told me that the people who seem to do best with treatment are those that start out in good shape. I guess that would be you!!

Congrats on a great race. Totally inspiring!

It is correct. I just spoke with her yesterday about it. Strange. Wonder if that's driven by her confidence in specific centers vs others? Sounds like she is pretty tight with the surgeon at NW who runs their pump program. At any rate, maybe this will change over the next few years if other centers...

I am in LA now and so bloated and gassy. My stomach looked like I was pregnant last night. I was up all night going to the bathroom! It seems a little better today and I'm not as uncomfortable. Bloating and gas was my first sign of typhlitis so this got me a little nervous. But then I thought about ...

You may be able to get the pump serviced locally once the chemo is done? MSK has authorized us to get the pump flushed locally monthly so we only have to come in monthly for the chemo. But you'd obviously need to have a local option that has a pump program or is willing to learn. (Luckily we do, it'...

I read an article that cited lower recurrence rates of colon cancer among coffee drinkers. That was enough for me to feel fine maintaining my habit. I went off the taste of plain coffee with cream a few cycles in, but still liked lattes. And I drank a LOT of eggnog lattes during my chemo break tryin...

Someone reminded me that my goal is to save my life. I don't have time for hurt feelings. I'm hiring someone for a job, and if I don't think they are capable or will be the right fit to work with me, I seek another candidate. And I really LOVE my Chicago-based oncologist, but I still struggled a bit...

We are officially scheduled with Dr Kingham and Dr Kemeny on Feb 18th. They will do a scan and confirm if I am ready for surgery. My NW onc thinks I will want to do one more round of chemo on the 25th, whereas Dr K doesn't think so. But she more or less agreed to it when Dr Stein pushed, and I suppo...

Lots of good advice thus far. Like you I am a mom, and when we talked to the kids we warned them about Googling too much. We said that I was younger than the average colon cancer patient and lucky to have access to all the best doctors. Definitely I have had the attitude that I am going to beat this...

We saw Dr Sohal there. Did not speak with a surgeon.

His reaction is interesting. Cancer has so many little indignities and for me the pump was so far down on the list of stuff that bugged me, it barely registered. Once it is strapped on, I pretty much forget about it, and the two days go quickly. I don't love not being able to shower while it's on bu...

I didn't have a great experience at Cleveland Clinic either. The doctor spoke to me about chemo as a first step, but wasn't willing to talk about anything that might follow, saying that discussing surgery at this point was like talking college applications in elementary school. I asked about live li...